The National Recommendations for Rare Disease health Care are eight practical recommendations, with embedded resources and educational courses, developed by a multi-disciplinary team including GPs. GPs are the healthcare professionals most often responsible for identifying people with a likely rare disease and co-ordinating whole of life interdisciplinary care and support for patients and their families. The Recommendations were developed as part of the Rare Disease Awareness, Ƶ, Support and Training (RArEST) Project, a collaboration between Rare Voices Australia, the national peak body for people living with a rare disease, and three universities.
Taking Action Together toolkit showcases how the Australian rare disease sector has worked to advocate for systemic change for people living with a rare disease. The toolkit comprises case studies and describes four key approaches for effective systemic advocacy as well as useful tools to apply these approaches.
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